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Documenting not dying since October 2013.

The 27th & 28th; The skin on my hands has been so damaged by this flare that I can see scars now.

The 27th of July.

A much better night. I only woke up once, went straight back to sleep, then woke up again at half past sux, which is a lie in for me right now. I actually got up about an hour later, feeling none of the horrible internal trembles I had all day yesterday, but still not 100%.

I was supposed to have Ang round at half eleven as she's home this weekend, but I was really not up to being sociable at all - I would have spent her visit wanting her to leave so I could nap, which is hardly fair. I will see her next time she is back.

Grandma was here today, to join us for lunch and to sit on the patio. I think it's nice to escape from Boldmere Court for a change of scenery as well. Becky came over with a wedge of birthday cake for us, so I had some for pudding and it was yum. I didn't have any last night. 

After lunch, I finished reading Bird Box which I bought the other day. It was alright - I finished it more out of curiosity rather than enjoyment, if you know what I mean. I wouldn't recommend going out and buying the hardback.

Then I went upstairs for one of my pretend naps, although I think I did actually drop off at one point as I woke up jerking my leg, so I definitely had some sort of rest.

ECP at nine tomorrow so early bed. The skin on my hands has been so damaged by this flare that I can see scars now.

The 28th of July.

And I'm back to being a quivering mess. Been awake since half three, was out of the house at eight. Going to have to do it again tomorrow because even though I'm not supposed to start treatment until two, I need a couple of bags of blood beforehand, so it will be a long day.

Today was a bit tedious because the line wasn't sitting very happily so we had to run a bit slower than last time. On the way home we popped into Tesco for brown paper, parcel tape, birthday cards and grapes - a weird basket, but I needed to wrap up some shoes to post and Grandma needed a card and the grapes! Home for lunch much later than we thought.

I was going to work out tomorrow morning, but since that plan was scuppered, I decided to do it this afternoon instead. I'm definitely not as strong as I was before we went away and I think it's the total lack of sleep and possibly not eating quite enough. I think I can relax on worrying about fat/wind now.

Oh tonight I'm just shattered. I'm hoping some blood might perk me up a bit too.

Boldmere's inspirational Kathryn isn't giving up despite her unique, fatal condition.

The 25th & 26th; "Brave Kathryn" strikes again!

The 25th & 26th; "Brave Kathryn" strikes again!